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pmm (@pmm)

What’s the science on diet and MGUS/SMM?

Blood Cancers & Disorders | Last Active: Oct 30 12:53pm | Replies (49)

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My journey began with a mother who had very rare autoimmune disorders, diabetes, etc. She died at an early age and was very miserable for the last 15 years of her life. Given, that was in the late 80s and they did not know nearly as much as they do now, for the most part, her illnesses have not advanced much from what I read by way of treatments. She trusted Mayo Clinic and went there 2-3 x a year with my father as her support system. Having a support system (which I do not now) is so helpful.

I started 10+ years ago with peripheral neuropathy symptoms in my feet. All the doctors I saw attributed it to my very flat feet and to my very low spinal disc herniation and early degenerative disc disease, pressing on nerves. A few tests were run to rule out 3-4 obvious auto-immune diseases, but none would have shown MGUS. CBCs and CMP were always pretty much normal. Ditto ANA and CRP tests were done.

It wasn't until I consulted a physiatrist about my feet symptoms and he decided to run some extensive blood tests on top of the EMG and NCS (both normal) that we saw an IgM paraprotein in my blood and he then sent me on to the large cancer center here. More tests and a BMB confirmed low-risk MGUS. I met and had a long interview via email and by phone with a MM survivor who had it pretty badly and has been in remission using supplements and a very strict diet for 25 years now. He made some suggestions, many of which I have adopted, especially the diet. He has an MM/MGUS group online also.

I also decided to contact a very well-respected MGUS/MM specialist at Mayo for a phone consult and to review all of my medical histories for the past 6-8 years. He said more is going on but is puzzling to him because all I have going on clinically is the PR and paraprotein basically. I will go for a battery of more tests next week locally. Depending on what they say, I will probably have a "fat pad biopsy" done sometime after those results come back.

So, without getting into a longer, boring story, that is my journey as it relates to MM/MGUS and related things.

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Replies to "My journey began with a mother who had very rare autoimmune disorders, diabetes, etc. She died..."

Which doctor did you see at Mayo? I am not familiar with a fat pad biopsy being used. I have SMM and have had 2 PET scans, three Bone Marrow Biopsies and periodic blood tests to monitor my nmubers.

I sure wish this group had an EDIT option for comments! If there is one, please share how to access it. I pride myself in writing intelligent, properly spelled sentences and it is so frustrating to not be able to "clean up" a typo!!

Sound similar!This is so interesting as I have had MGUS now for 12 years and all I ever hear is that I don’t need treatment yet (thank goodness) as the treatment is also destructive to the body. So I cope with joint pains, especially hip , stumbling, PN in hands and feet and sleeplessness, tiredness, heart racing on my own.
I also consulted a neurologist if the nerves were transmitting with delay but he said that all is in Norm. Cardiologist said basically the same.
I do hv asthma and allergies but they were there before.
Does anyone have unspecified symptoms like I do?
Diagnosis:Lambda gammopathy and lambda bench jones proteinemia.
One feels like a hypochondriac
Cheers and glad to be here.

Good morning @circawdm I would love to learn more about the diet and supplements recommended by Dr. Dongli at Mayo and the MM survivor you consulted with. I am still in the early stages of MGUS/SMM diagnosis. I meet with a hematologist for the first time next week. Meanwhile all I know is that my IgM paraprotein level is 0.4, and I have peripheral neuropathy. I agree wholeheartedly with your philosophy of always consulting with a specialist before undertaking any complementary medicine cures. . I would love to learn more about the diet and supplements recommended by the doctor you consulted with at Mayo and the MM survivor you consulted with. Thanks so much for sharing your experiences. I hope the testing you recently underwent yielded helpful, actionable information.